Living with Hep C who should get treated

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July 28, 2000 -- When Fran Kee learned he had been infected with the hepatitis C virus, he decided to start the grueling, yearlong treatment process, even though doctors said he could wait. His blood tests showed extremely low levels of the virus, and all but one of his liver enzyme readings were normal.

"I just wanted it gone," says Kee, 46, a longtime member of the Philadelphia Fire Department.

A few months later he began a 48-week course of ribavirin and interferon, antiviral medications that are the standard, though often ineffective, hepatitis C treatment. Every morning and evening he had to swallow three ribavirin pills, and three times a week his wife injected him with interferon. The treatment left him feeling perpetually ill, and deeply depressed.

"It wasn't too bad in the beginning, but it got to be hell," Kee says. "You can't sleep, you can't relax, you feel like you have a bad flu off and on. I didn't know what depression was until I was on this treatment. It was the worst year of my life."

Ineffective Therapy

The combination therapy devastates most people, says Leonard Seeff, MD, a pioneering hepatitis researcher now at the National Institutes of Diabetes and Digestive and Kidney Diseases. And as if the ordeal weren't bad enough, more than half of patients aren't virus-free when it's over. Kee was fortunate; his hepatitis C is currently in remission.

While hepatitis C can be fatal if it progresses and causes liver disease, many infected people can go all their lives without symptoms. And since the only available treatment can take such a toll, doctors look at several variables to decide whether, when, and how to treat someone who tests positive for the virus. When lab tests show persistently elevated liver enzymes and the presence of hepatitis C in the blood, doctors typically order a liver biopsy to check for inflammation or scarring. If biopsy results indicate damage, the patient is a prime candidate for the combination therapy.

Watchful Waiting

If the biopsy is negative, what to do is less clear-cut. But lately some experts have advised against the medication, instead recommending regular monitoring with blood tests and liver biopsies to see if the disease has progressed. "In these patients, observation, including [liver enzyme] measurements and a liver biopsy every three to five years, may be an acceptable alternative to treatment with interferon because progression to cirrhosis is likely to be slow, if it occurs at all," wrote three hepatitis specialists with the Centers for Disease Control and Prevention, Linda A. Moyer, RN, Eric E. Mast, MD, MPH, and Miriam J. Alter, PhD, in a January 1999, article for the journal American Family Physician. If six to 12 months of blood tests show liver enzymes have remained normal, they said, patients' blood could then be tested once a year.

How well treatment works depends partly on which type of the virus the patient has. Researchers have pinpointed three genotypes (versions) of the hepatitis C virus. Unfortunately, genotype 1 -- the most common form in the United States -- is the hardest to treat successfully.

With all three genotypes, some doctors begin treatment incrementally, using interferon alone; in those cases only 15% to 25% of patients remain virus-free after one year. That's not counting African-American patients, who for some reason -- researchers aren't sure why -- remain virus-free only about 5% of the time, according to an NIH study presented in 1998 before the American Association for the Study of Liver Diseases. Black Americans also progress much more slowly to end-stage liver disease than people of other races. The combination therapy is slightly more effective against genotype 1, with a 30% success rate (again except for African-American patients, who respond more poorly). "The response rate is low, but it is getting better," says Seeff.

Patients generally are treated with the combination therapy for six months, then retested. If blood tests show no hepatitis C, those with genotype 1 stay on the regimen another six months to increase the odds of successful remission. But if the virus is still present, doctors usually decide the treatment isn't working and discontinue it.

Hope for the Future

Scientists do hold out hope, however, as they continue to research new and improved weapons against hepatitis C. One promising drug in development is pegylated interferon, which is less readily excreted from the kidneys than the interferon now in use, so it remains at consistently higher levels in the blood. That means patients will need to be injected only once a week, which may make treatment more physically and psychologically tolerable.

Preliminary data suggest pegylated interferon, used with ribavirin, can be just as helpful as the current combination treatment -- possibly even 10% to 15% more effective, says Seeff.

The ideal solution would probably be a vaccine, so that everyone could be protected against this mysterious and insidious disease. But experts don't expect to have one anytime soon. "The virus undergoes mutations," Seeff says. And it mutates so quickly that an inoculation given today wouldn't work against an evolved strain a few years later. "There may be other ways of dealing with hepatitis C" still to discover, he says. "But there is no conventional vaccine on the horizon."

Bob Calandra is a freelance writer whose work has appeared in People and Life magazines, among others. He lives in Glenside, Penn.